More Comments on to Tell or Not to Tell About Our CLL

Here are three comments that tell a very different story about the risk of sharing the CLL news.

Would that the world was different. My hearts especially goes out to the first anonymous commentator, who ironically is not so anonymous at church and home. He speaks poignantly of the cruelty of friends and family and the kindness of strangers.

Strong arguments for keeping our mouth shut, when possible.

For the origins of this discussion, please see my recent post on the death of George Duke,  the follow-up post with a related comment and my much earlier post on the CLL death of Jill Clayburgh.

The comments speak for themselves.

Anonymous said...

I can't relate to what you are saying and the experience of others you have described.
I told everyone I knew about CLL, people I trusted and loved. In doing so, over time, my friends and close family deserted me, my church didn't understand and wasn't able to relate how ill I was nor provide me with the support I needed, eventually I left that church.
You see for me CLL, in combination with another chronic illness, made me very ill, so ill I couldn't work anymore and I lost my job, lost my career, my friends started to distance themselves and so did my close family, it was as though I were leper.
Now it is rare for any of those to phone to ask how I am, none offers to help; none visits; only my wife supports me. I use to be always the one who would keep in touch and phone and see friends and family, but now when I am in greatest need all I get is silence. Old friends busy themselves with self interest activities, I use to ask them to meet me for a tea or coffee but they always had some excuse not to meet, same goes for close family, I haven't seen my brother and sister for many years even though both are capable of visiting they choose not to. So I've given up hoping anything from them anymore. Even the medical profession has been woefully poor in providing support, so often I (and my wife) have been left to fend for ourselves.
Only now my life is close to the end does anyone seem to care, and those who do have been strangers, and at last this has got my sisters attention and she shows some concern and occasionally phones but alas it's usually a case of her saying something like "keep me posted etc.", same old habits same old complacency.
The strangers are people on CLL forums, people in palliative care, people who can relate to illness, suffering and ultimately have known people who have died. They provide words of comfort, they put an arm around you and hold you as you cry, they make you a cup of tea and offer you food, they help you walk and support you as you struggle to walk or stand. These are the real angels in this world, these are the people with love and compassion in their hearts, and these are the people who share your pain and suffering.
Yes, there really are good Samaritans in this world, however there are others who choose to look the other way and walk by on the other side, but the ones who have love and compassion in their hearts are angels in this world.

AUGUST 10, 2013 AT 7:12 AM 

(Another) Anonymous said...

The problem often lies in what you must reveal due to medical appointments. I went through a clinical trial and never missed a day of work except for days when I had infusions. I elected to tell a very small number of people who were in my direct line of reporting so they would understand my need to specify firm dates out of the office. Unfortunately a couple of those people chose to tell others out of "sympathy." Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller. Needless to say I was irate over my supervisors revealing a personal medical matter. Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise. I managed to set things straight by doing my job at a high level of productivity, much to the dismay and even annoyance of my family. But you can't show fatigue or you are out of the game. Some people started talking about my retirement, something I neither wanted nor could afford due to health insurance issues. We all have different circumstances and needs, but I would opt for silence.

AUGUST 8, 2013 AT 6:23 PM

 justme said...

Couldn't agree more with (another) Anonymous writer, especially this: "Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller ... Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise."
I'm not so concerned about keeping or moving up in my job as to seeing the pitying eyes, etc... Since I'm mutated and haven't had treatment since diagnosis in 1/06, I would most likely have to deal the cancer label for quite some time.
Only my family (including extended) and one close friend know I have CLL.

AUGUST 11, 2013 AT 6:33 AM

Comments

I am not sure how many of you read the comments. You should.

My readers are amazing articulate, passionate, compassionate, and wise.

Many of my posts are based directly on your comments and emails.

This recently posted comment with its evocations and worried whispers deserved to be shared in a more accessible manner.

It leaves me wanting more - more contact, more information, and mostly more good news.

Please remember that unless include contact info or you email at bkoffmanmd@gmail.com I have no way to get back to you.

Brian,
Feeling raw already and this article was just what I needed to be fully cooked. "Dad's numbers have gone down" this is what I hear from my Mom lips in slow motion the minute Dad walks out of the room. No more appetite for me, lump in throat, twisted gut..i am done, want to run from the sadness that has been hiding like a grim Lord or the Rings character.
I have had a year off from the worry. He has been in remission for a year. I have been as creative as a 6 year old but with 40 years of know how.
Numbers down is not awful news but it's the fear in her eyes that drowns me. I can handle my Fathers death, I can survive the misery of people bugging me, trying to ram rod me with Christian love.
Can I remain a float in my always cheery Mom's tsunami?
Today I think maybe, but it's going to take a huge pre-social purge on my part.
A 46 year marriage , the only man she ever kissed. I am just not sure how she will survive more health drama...it's changing her.
Tuesday it's marrow tapping time so I will have to wait, she will have to wait.
I will have to go on like it's all OK until it's not... on the outside.
good thing I have a puppy and a new bike.
Love X1000

Talmudic Comments

After almost a year and a half of blogging, and nearly 100,000 page loads, I finally realized I could comment on your comments.

Duh!

There are some great commentaries on my last post and also my humble replies. Take a look, please. You will be rewarded. Just click on comment at the bottom of the post.

This is actually very Talmudic. As Rabbi Hillel, would say while standing on one leg in a very different context two thousand years ago: The rest is commentary. Now go study. Wouldn't it be great if I could set up a blog where the comments and references wrapped around the page in the fashion of the Babylonian rabbis? I am sure someone expert in HTML could make it happen, but I will spend my energy elsewhere.

Still if you want a personal response, please email at bkoffmanMD@gmail. com. That also is the only way I can get your contact info, as the blog does not capture emails. And you might want early notification of my book- still a work in progress, a labor of love and angst, and positive transformation- and that would be my only way to reach you.

But for now my simple goal is to make the comment section more lively and informative when the subject is appropriate, and occasionally even when it is just for fun.

Constant Comment

You must read the eloquent and heartfelt comments on my last post.

Please remember to email me at bkoffmanMD@gmail.com if you want me to respond.

To my friend who is a fellow amputee, having, like me, lost his 11 q arm (chromosome) in the CLL mine fields, and who also has growing nodes, let me suggest that there may be ways to flush out the cancer cells from where the sweet "nurse cells" are keeping them safe from all the poison arrows we can hurdle in their direction.  With AMD 310, or Cytoxan or GM-CSF we may be able evict those no goods that just want to live forever in a nice warm gut node while eating us out of house and home. With coaxing, we might get them out into the blood stream where they must take their medicine like a cell with no resuscitation from their posse. Out in the open, they will be dropping quicker than the value of a share in Madoff's hedge fund.  

I think MDACC has a study using GM-CSF  and R.  I am planning to research it.